What's Up with Ari

Well big guy, you did it. Ten years old today. I’ve never written you a letter on your birthday, but I’ve dreamed of your tenth for so long I can’t help myself.

I remember the day you were born, thinking “Who is this kid? Who is he going to be?” I held you in my arms for the first time in bed space 4 in the Cardiac Intensive Care Unit at Boston Children’s Hospital, dreaming of the life that was ahead of you, not sure you’d even get the chance to have one.

Boy, did you have one.

I’ve watched you grow up, been there for everything, and I couldn’t be prouder of you. I remember so much about your younger days. I don’t want to forget one detail so I’ve been writing memories down furiously lately. Here are some of my favorites.

Before you were born, the anesthesiologist for your fetal intervention had to medicate you twice to get you to stop wiggling around. You were feisty from the start.

Mom and I spent first year of your life with you mostly in the hospital. Two open heart surgeries, countless procedures, and several brushes with death. As we cried and struggled and worried about what the next day would bring you smiled and laughed through it all. You were always full of sunshine.

When you were one, at first you didn’t quite know what to do with your new sister. Once you figured it out, you couldn’t have loved her any more. You were always Lexi’s hero.

When you were two you’d see kids out on Lake Boon and scream, “They’re swinging on the rope!” You’d beg me to take you out on the kayak (you only needed to ask once, you know) and we’d paddle around the lake singing America’s “Tin Man” together. You were always Mr. Enthusiasm.

When you were three you asked Make-a-Wish to build you a basketball court in your back yard. Your wish came true. We played baseball, basketball, hockey, and golf there for hours on end. As I sat on the court just yesterday, I closed my eyes and memories of you flooded my thoughts. I soaked up every one. You were always such a sports fanatic.

Age four was epic. Red Sox, Bruins, Celtics, and Patriots games. Drafted on to the Assumption College baseball team. Eighteen holes of championship golf and you played every one. (What 4- year-old in congestive heart failure does that?) Your baby brother joined our family. Right from the start, you loved Eli so much.

The beach vacation in Maine where you played and played and played and we thought, “Ari’s heart is getting better.” But it wasn’t. The next week we learned you needed a transplant. You always kept us guessing.

Four to five was intense. You spent most of the year at the hospital attached to an IV pole. That sucked. But we were also attached to each other. To me, this was a gift. We spent 24 hours together, every day, for more than six months.

Zayde, Grammie, Katie and countless other people rallied around you, too, to keep you company and help you through the sickness, surgeries, and pain. No one, however, was there more than your warrior Mom. She did everything from giving me a break sleeping at the hospital to spending countless hours with you during the day, to bringing in Lexi and Eli when everyone was well. Mom kept the family together, and gave you family life even though you were often quarantined to your room for weeks on end.

You faced everything with determination, grit, and grace. You were ready to karate chop Dr. Blume at every turn, but you also defined bravery. Crying when you needed a blood draw or an IV, but holding out your arm and barking commands to tell the nurses how to do it. I’ll never be as brave as you.

Then after 211 days the call came in. At 11:32 p.m. on March 3, 2017 your new heart began beating spontaneously in your chest.

For the shortest time, everything was perfect. Perfect heart, no rejection. I remember when you woke up after the transplant you announced you were getting out of bed to lounge in the sun in the CICU window.

In that moment, I could see you as a teenager. Doing and being everything you always wanted.

I was never so happy in my life.

Then the rejection came and you got sick. Sicker than you had ever been. We didn’t think you’d survive the first cardiac arrest, but you did. After 189 days in the hospital, we took you home.

For one magical month.

We played golf. Went to the U.S. Senior Open and hung out with your golf idol Hale Irwin. You helped Mom decorate the house for Lexi’s fourth birthday and were so happy to be there to celebrate. You’d dreamed of that for months.

Went to your first concert with a Grateful Dead tribute band. Played baseball and football with Christian Vasquez and Xander Bogaerts (which you never stopped talking about). Got invited to throw out the first pitch at Fenway.

Then you got sick again. So sick. I held you in my arms as we called 911. We lost you for a while there. I never cried more in my life.

We were only two-thirds of the way through Star Wars Episode III. I didn’t let you watch when you were younger because it’s pretty scary. But you were so mature. We talked about it and put it on. You were so excited.

We were only halfway through Harry Potter and the Prisoner of Azkaban. Harry just noticed the Ravenclaw Seeker, Cho Chang, was super cute! You thought that was hilarious.

When we left Frodo, Merry, Pippin, and Sam they had just met Strider at the Prancing Pony in Bree. Great adventure still lay ahead.

You wanted so badly to find out who the Last Jedi was. (Luke? Rey? Jedi plural?)

You were supposed to throw out the first pitch at the Red Sox on August 27. I thought you wouldn’t make it. My heart broke.

You didn’t care we lost our house to mold damage while you were in the hospital (that is, once we told you we were building you a bigger play room). But you wanted so much to watch the new house go up.

Next season you were going to hit leadoff for the Assumption Greyhounds. We talked about how you’d show them how baseball was done, hit a frozen rope, and then steal home for good measure.

But it was the quiet moments I cherished so much. One more page. One more time with Han Solo frozen in carbonite. One more Red Sox at bat. One more time throwing me on the pillows. One more hug and kiss. Everything one more time.

Then there were no more times. You were gone.

My world ended.

But suddenly you were better. All better. No more rejection. No more 62 individual doses of 21 different medications a day. No more round-the-clock oxygen. No more sticks, pokes, or IVs. No more central lines and never-ending IV antibiotics. No more feeding tube.

No more caths, infusions, or open-heart surgeries. No more worry that every time you’d catch a cold you’d land back in cardiac intensive care.

You were perfect again. You could do everything. See every Star Wars and Harry Potter movie. Drink all the water you wanted, play all day, and watch all the Sox, Bruins, Celtics, and Patriots games. It was pure joy.

You were pure joy.

Then you were six and your dream came true: starting shortstop for the Assumption College Greyhounds! Nailing a triple on the first pitch, going 2 for 3 with a triple play(!), and one steal; home base of course. You never did anything small.

You started kindergarten, too, something you’d been dreaming about for years. When you were three you told us you were so excited for kindergarten. We asked, “Why?” You said, “Because I’ll be going to a sports kindergarten.”

Mom said, “Honey, I don’t think there are sports kindergartens.” You replied, “They’ll build one for me.”

They did.

You turned seven and we went to Japan. You begged to see the land where, as you’d tell everyone, you’d be playing baseball for two years before you’d join the Red Sox. So we thought, “Japan. Why not? Let’s go.” The wonder in your eyes at every turn warmed my heart. You surprised everyone you met that you spoke fluent Japanese. You were the smartest kid I ever knew.

At eight, you got into your first fight at school. Of course you were sticking up for someone getting picked on, and you melted my heart once again. Add kindness to bravery. You always cared deeply about other people and their feelings.

Nine saw you make the varsity golf team at Nashoba High School. We had to fight for your tryout because third graders aren’t usually allowed to play high school sports, yet they couldn’t deny you were better than everyone else on the team. You never followed rules (leaving Mom and me to sort out all the messes), but you always followed your dreams and lived with passion. You always blazed new paths.

Now you are 10. Still my little boy. You’ll sleep forever with your Wallies, Pluto, baseball glove, and Red Sox blanket. (And I see you watching Puppy Dog Pals with Eli when you think I’m not looking!) Oh, my little boy.

Still I close my eyes and imagine you becoming a man. Most men never face even a sliver of your struggles. Against all odds you overcame every one.

Now things have changed and you’re not with me. I can’t hold you like I held you all night when you were a little boy. I can’t bury my nose in your hair as you fall asleep. I’ll never wake up at the hospital to beeps in the middle of the night, going into emergency mode to make sure you got everything you needed when you fell off the horse.

I’ll never drive you to the first day of school, feeling the excitement and the butterflies right there with you. I’ll never hold you when you are a little older but you still need to cry, and you need to do it with me. Just us, because you don’t want anyone else to worry that you are afraid.

I’ll never hold you again. Instead I’ll hold you in my heart every day. I’m so grateful for you. You’ve given me so much pride, so much joy, and so much love.

Ari, to the world you may have been just one person. But to me, you were the world.

***Update #2: Just after 10 a.m. Ari coded in the emergency department. He had over a half an hour of CPR and has been placed on life support in the cardiac intensive care unit. Path forward unknown.***

***Update #1: Spoke too soon about looking ahead more than one day at a time. We called 911 at 4:19 a.m. as Ari was having a seizure. Very scary. At the hospital now. Something is going on. We don’t know what.***

On June 16 Ari came home.

We were all pretty excited (and us old people were also pretty nervous), but no one was more excited than Lexi. She got her hero back and was completely beside herself. I guess we all got our hero back.

Of course, it didn’t take long for them to be at each other’s throats. A few days ago she was jumping around and knocked over Ari’s water. As we all know, Ari is pretty attached to his water.

What would you guess his reaction was? Tantrum? Fight? Crying?

Ari looked at Lexi deadpan and said, “When they put the sorting hat on you, I’m confident you’ll be placed in Slytherin House.” (He wasn’t quite as diplomatic when she yanked him from behind by his nasal cannula tubing so she could get to the sink first to wash her hands. 15 yard penalty on Lexi for egregious face mask.)

Ari’s a special kid for sure. I’m so proud about how he’s grown up. Somehow he figured out how to develop and learn like an almost sorta normal 5 year old. I bet he’ll be reading sometime soon, retains everything we read to him from Harry Potter, currently in the middle of book 3. And I’m telling him the Lord of the Rings story at meal times in great detail and he loves it. We just met Strider in Bree. Exciting ride ahead of us!

He’s still on oxygen 24/7, which is limiting, but he’s adjusted pretty well. 23 medications now down to 22 (at the moment)! Some are rough on his stomach, but others are just rough. He’s on a high enough steroid dose to have moon face, not sleep great, have some possible pre-diabetes developing, and won’t grow.

He’ll have to be on 1/3 of his steroid dose to allow his bones to be able to expand. Right now he’s stuck off the height chart and not getting anywhere near it for quite some time. Maybe next year, but for now, he needs the steroids to keep the rejection at bay.

At the hospital 2x a week for clinic and infusions. He hates blood draws and IVs. One session took 6 pokes and 2 hours, but besides all this his quality of life is great. He gets absolutely exhausted in 10 minutes of heat, but if it’s on the cooler side he can play for quite some time.

Meanwhile, since he’s been home we’ve:

Been to the baseball field a few times. This is where he usually asks to go along with his basketball court in our back yard in Stow for hoops, golf, baseball, and swing set.

Enjoyed Lexi’s birthday. This was a big thing for Ari as he was asking for months if he would be home for Lexi’s birthday. He made it, and is psyched to be home for Eli’s on August 5.

Visited Grammie’s house in Maine. He loved lobster races and lobster eating, the beach, and mini-golf where he, of course, finished out the 18th with a hole in one.

Taken to the kids first music concert, a Grateful Dead tribute band. Fun times! Ari loves The Dead.

Had fun visits from the Assumption College baseball guys and coach. Lots of baseball and PS4. Ari fell asleep on one of the guys after a busy morning. After another visit, we promptly went inpatient (never mentioned that) for 24 hours of observation and infusions. Ari is not showing signs of improving, so the team wanted to have eyes on him. Not worse as far as we can tell, but not better.

Had a special visit to the U.S. Senior Open at Salem Country Club. Met last year’s winner Gene Sauers, met the great Tom Watson, and spent a good 30 minutes hanging out alone with one of his all-time favorites Hale Irwin. Hale was awesome with Ari, and they had quite the connection.

We also hung out last week at the site of our former house in Stow. The kids enjoyed watching the “dinosaur” chomp up the house. In typical sibling fashion they were fighting over whose room was eaten first. It’s officially a hole in the ground now. Bye bye house. We also got the official letter from the insurance company. Not one red cent. Ah, life.

And, perhaps the biggest news of all came in the form of a home visit by Christian Vasquez (catcher) and Xander Bogaerts (shortstop) of the Boston Red Sox! They stayed for two and a half hours playing baseball and flag football, and reading Ari stories in his room while Ari showed them all of his stuff. It was truly a magical day. Christian and Xander were very gracious and sweet with Ari.

Christian and Xander also told Ari that he’s been invited to throw out the first pitch at the August 27 Red Sox game! Will be another magical day. I have a feeling Stubhub will see a bit of a run on tickets in the next few days. We hope you can all come.

Two other pieces of news worth mentioning.

Ari Danger Schultz day in Stow will be on August 19. Noon to 7 p.m. in Stow. Click on the link for info and to RSVP. Should be lots of fun. Bouncy houses, multiple live bands, food trucks, breweries, wineries, raffles. And, most important of all (health permitting), Ari is planning to be there.

ESPN E:60 is planning to do a feature piece on Ari planned to air on September 3. They’ve been with us at the hospital and house filming, and will join us at Ari Danger Schultz day and at the Sox. Should be pretty cool.

Ari visits with golf legend Hale Irwin

As for our immediate future, Ari has a cath on Monday for a biopsy and to check pressures. We don’t expect new rejection on the biopsy, but who knows. As Ari hasn’t shown obvious signs of improvement cardiac-wise, we’re hopeful for even a glimpse that the pressures are getting better.

His last PVR – a measure of the pressure on his right heart and lungs – was 7. 7 is bad. This is why he needs oxygen, sildenafil, digoxin, amlodipine, lasix, diruil, spironolactone, and potassium chloride. All that and it’s still not enough. His heart needs to relax more, and recover more from his rejection and arrest. Time will tell.

Someone told me once that if you think too much about the future anxiety takes over. If you think too much about the past, you get depressed longing for the old days. We’re taking it one day at a time. Well, maybe we’re looking forward to throwing out the first pitch on August 27.

People often live life quietly. They’re born, go to school, grow up, have their fun, make their mistakes, have their struggles, get married, have a career, make more mistakes, retire, and call it a day. A rare few, however, live life unbelievably. They shine bright. They don’t do anything small.

Some may think it a bit much to say this about a 5 year old, but this is Ari. He doesn’t just shine, he sparkles. Wherever he goes, he lifts up everyone around him.

Ari took a few steps all by himself yesterday! He got on the scale for his daily weight and said, “Oooo, I feel something. I’m gonna walk!” We’re taking all the little victories we can get. The last few weeks have been rough. Roller coaster more than anything. For every little bit of good news, we are also hit with a challenge.

Ari took steps! But his liver is hard to the touch and is stressed. Ari’s heart rate is stable! Then it’s up 20 points for no reason. Ari is eating and not throwing up! But his last echo showed that his right atrium is now moderately to severely enlarged.

Earlier this week Ari got a visit from NHL all star Nick Foligno of the Columbus Blue Jackets. Biggest smiles we had in a long time! Ari loves his NHL and his friend Nick. Photo used with permission.

On Thursday morning just before noon we had a great baseball session in bed with Ari. He was getting stronger, sitting up in bed, and in a great mood. He was the catcher and umpire, putting down signs for pitches: 4 for the changeup, 3 for the curve, and 2 for the slider. Of course all the pitches were strikes. Erica was up. She said, “Ari, that one was outside.”

According to him, “No! It was right across the plate.” When he was up, he got a hit and said, “I need a pinch runner.” Ari’s primary cardiologist walked in just in time to oblige and play for a bit. She asked Ari what day it was. He said, “It’s karate chop day!” Next she asked, “When can it be kissing day?” He said, “Not until I’m older, so it’s karate chop day.”

Then she asked us to step outside to talk.

By 12:30 p.m. Ari was heavily sedated and placed back on the breathing tube.

The point of this post is to ask you to go here https://echoofhope.org/100klives/ and help out. If you do this but don’t read the rest of the post I’ll be sad, but I’ll get over it.

When millions of people saw Ari’s video as it went viral the day of his transplant we were immediately flooded with media inquiries. For two reasons we still have not spoken to any press yet. First, we were (and are) focused on Ari. Second, we are sensitive to the fact that a family had lost a child, and yet, during a time of immense grief, chose to give the gift of life.

We didn’t feel comfortable speaking with anyone.

In the few minutes we talked to each other about it, we asked ourselves, “If we have 15 minutes of fame, what do we want to do with it?” We didn’t have an answer.